Book Review: Being Mortal

Being MortalI could wrap up my comments on Being Mortal by Atul Gawande succinctly by saying that if you plan on getting old or dying or helping a parent as they age, you need to read this book. But I’ll try to give you a bit more to go on.

I don’t know that I would have noticed this book at all except that Lisa and Joyful Reader both mentioned it. I knew they had dealt with deaths of parents and grandparents, Lisa’s mom had been in assisted living and Joyful’s grandmother lives with her, so with their experience, their praise for this book meant a lot.

I ended up marking many more pages than I can possibly share, but it’s safe to say that much in this book resonated with me.

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The subtitle of the book is Medicine and What Matters in the End, and it’s a frank treatment of end-of-life issues. Medicine, Dr. Gawande asserts, is geared to fix things. But in some cases the treatment is worse than the disease itself. And this tendency is part of what had led to institutionalizing people as they age and making it a medical matter rather than trying to give people in such situations the best days they can have in the time they have left.

Gawande notes that until fairly recently, most deaths occurred at home. Now most occur in hospitals and nursing homes “where regimented, anonymous routines cut us off from all the things that matter to us in life” (p. 9). In addition, it used to be that, unless you had a long, wasting illness like consumption, most deaths came suddenly like a thunderstorm. Modern medicine has been a marvel and a gift from God: many things that used to be fatal can now be treated. But like any gift, there are good ways and not so good ways to use it.

“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

I appreciated his explanation of how the style of doctoring has changed over the years, from the authoritative “Dr. Knows-Best” who made all the decisions for you, to “Dr. Informative,” who merely laid out all the options and let you decide. The problem with the latter is that we don’t always know how to process the options. When the author’s own father faced a tumor in his spine, he, his father, and his mother were all doctors yet felt overwhelmed by the information and options they were receiving. A third kind of doctor is called “interpretive” and gives information as well as guidance after asking what’s most important to you and what your concerns are (pp. 100-102).

Gawande proposes a series of questions to consider when the diagnosis is terminal, questions concerning what’s most important, what one’s goals and fears are in facing the time they have left. One man said he wanted to continue to eat ice cream and watch football on TV, and he wasn’t interested in any treatment that interfered with those activities: life wasn’t worth living without them. Some are willing to live with different degrees of disability and pain: some don’t want to suffer at all. It’s good for a family to have these discussions so they have some idea what would be the most important to their loved one. Sometimes it requires more than one hard discussion: “Arriving at acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany” (p. 182), and your preferences might change over time as well. But these discussions are necessary to find the best means of “living for the best possible day today instead of sacrificing time now for time later” (p. 229).

Gawande also details the journey from being independent to needing assistance to needing full time care that elderly and their families face. We’ve faced much of this with my mother-in-law over the last few years. I especially appreciated the history of nursing homes and assisted living facilities and the goals and purposes that Keren Brown Wilson, who “invented” assisted living, had when she started, and how those were originally implemented and maintained and then encroached upon to the point that she had to resign from her own board. Nursing homes themselves “were never created to help people facing dependency in old age. They were created to clear out hospital beds” (p. 71).

Many of the problems he lists in assisted living and nursing homes were the same as what we had found: loss of autonomy and privacy, loss of purpose, “tasks [coming] to matter more than the people” (p. 105), “safe but empty of anything they care about” (p. 109). “Making life meaningful in old age…requires more imagination and invention than making them merely safe does” (p. 137).

In older history and in other countries, the old are revered as having great knowledge and wisdom: “Now we consult Google, and if we have any trouble with the computer we ask a teenager” (p. 18). At least one sibling used to stay with the elderly parent(s) and help care for them, and then got a larger portion of the inheritance or perhaps the family home in place of what they gave up. Now both parents and adult children value their independence. But “our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible” (p. 22). Yet the author researched and visited several creative ways for an older adult to retain as much independence and autonomy as long as possible.

One problem is that even though geriatric specialists have been shown to enhance the lives of the elderly, geriatric units are shrinking or being closed rather than growing. “97 percent of medical students take no course in geriatrics” (p. 52). One reason is that it doesn’t pay well; another is that insurance doesn’t see the need for it. It remains for those of us who deal with the elderly or who look ahead to our own old age to be aware of issues.

When I was first looking at information about the book, I was wary that the author might promote assisted suicide for those with terminal illnesses. He does not promote it, but he would support legislation to enable giving people lethal prescriptions if asked, noting that half of them don’t use them: they just like the assurance that they could. He does note, though, that in countries where it is legal, use has grown: “But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it….We damage entire societies if we let this capability [assisted suicide] divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well” (p. 245). (A good Christian source on some of these thorny issues is When Is It Right to Die: Suicide, Euthanasia, Suffering, Mercy by Joni Earacekson Tada.)

He also points out that it is difficult to know exactly where the lines are sometimes. “We also recognize the necessity of allowing doses of narcotics and sedatives that reduce pain and discomfort even if they may knowingly speed death” (pp. 243-244). Sometimes it is wrong to turn off a ventilator: sometimes it is right. If a 20-tyear-old was diagnosed with Type 2 diabetes and wanted to let “nature take its course” rather than treating the illness, we’d try to convince her that the quality of life she could have with treatment would be well worth it despite the complications: it would be ridiculous to die of diabetes when there is treatment available and the possibility of a long, productive, and happy life. On the other hand, when my father was dying of various other issues and they suspected he had colon cancer, they decided not to put him through what would be involved in diagnosing, much less treating it, because in the long run it would not make a difference in how long he would live and would only make his last months miserable.

The author writes from a secular viewpoint. As a Christian, I thought a lot about how a Christian worldview would affect this topic. As Christians we know where we and our believing loved ones are going, which takes some of the sting out of death. But we don’t take it lightly or flippantly, either. Death is still called an enemy. We hold life as a gift from God and believe He is the only one with the right to end it. It is to be given back to Him and used for His purposes. Sometimes that includes suffering, yet we’re also called to alleviate suffering if possible. While there are fears about loss of independence and abilities in older age, we can trust God to help us through that time: And even to your old age I am he; and even to hoar hairs will I carry you: I have made, and I will bear; even I will carry, and will deliver you.  Isaiah 46:4. But issues and question the author brings up are needful to consider, preferably before crises hit. In some cases there is no one right answer for what kind of treatment to pursue: the answer will vary depending on a number of factors.

I like this summation near the end of the book:

I am leery of suggesting that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives (p. 243).

(This review will also be linked to Semicolon‘s Saturday Review of Books.)

Adventures in Elder Care: A Plea to Caregivers

EldercareIn previous posts from my Adventures in Elder Care series, I discussed helping a parent as they age, things to consider when making decisions about care, our experiences with assisted living and nursing homes, and caring for a parent at home.

As we’ve dealt with my mother-in-law’s slow decline, we have had her in three different assisted living facilities (she had to move from the first when we moved to another state, from the second when she could no longer get herself where she needed to be during a fire drill in the allotted time, the third when she was hospitalized with a septic infection and her facility said they would not take her back because her needs exceeded their abilities), a nursing home, and now we have her at home with home health care aides coming in a few hours a day. We’ve seen a variety of caregivers, some very good, and a few, not so much. I wanted to bare my heart with a plea to caregivers.

But before I do, I want to say that I know you don’t have an easy job. We saw a fairly quick turnover in all the facilities where my mother-in-law was. I assume people get into this profession because they have a genuine desire to help people, and I can imagine the daily toil burns some out. I know you’re underpaid and overworked, that your job can be messy and trying. I know some residents are unreasonable or argumentative, some say or do inappropriate things, some are even violent. At my mother-in-law’s facility, one resident always cried if she wasn’t asleep, several were always trying to escape, one often yelled from her room, the TV was always blaring, and once as I sat and listened for the time I was there, I thought, “I would go stark raving mad if I had to work here for hours every day.” I know doing the same tasks, having the same conversations, dealing with the same problems every.single.day. can wear on you.

But still I plead with you to remember a few things as you care for folks. I’m reminding myself of them as well since I now help take care of my mother-in-law in our home:

1. Do unto others as you would have them do unto you. The Golden Rule. The teaching of Jesus. This one principle would take care of a number of issues. Some times, when I’d see my mother-in-law bent over double in her wheelchair or with red splotches on her face due to food that hadn’t been completely washed off after a meal, I’ve wished I could say to someone, “What if this was your mother? grandmother? How would you like to be treated if you were a resident here?” Most times these things are oversights rather than willful neglect, but still, in our experience those things became a pattern that affected the quality of life of residents.

2. Remember the residents are people, not tasks. It’s so easy to get caught up in all the things that need to be done that we can forget that we’re dealing with real people rather than a list of tasks to accomplish.

3. Take care-giving tasks as opportunities to interact socially with residents. Take time to show personal interest in your residents, even if they aren’t responsive. After we brought my mother-in-law home, I found several training videos on YouTube about using a Hoyer lift, changing someone’s position in bed, etc. Most of the videos taught the caregiver to greet the patient/resident first, say hello, ask something about them, and then explain what they were going to do. I’ve seen some caregivers do this, but usually in limited fashion. I did see some come in in pairs and talk to each other during the whole procedure of whatever they were doing without saying anything to my mother-in-law at all and without really looking at her except for the task they were doing. When she was in a nursing home, on a pureed diet, and losing weight, we found that caregivers would sometimes watch TV while feeding her and not interact with her at all, but would just mindlessly shovel food in. Can you imagine being on the receiving end of meal times like that? We asked if they would turn the TV off, make sure her hearing aid was in and working, and talk to her a little while they fed her. When they did that, her eating improved.

4. Put yourself in their shoes. This overlaps with the first one, but what I mean here is to think about what it would feel like if someone came from behind you and started moving your seat suddenly. That’s how it feels if you start moving someone in a wheelchair without letting them know what you’re doing. (I know – I spent a bit of time in one.) It’s even disconcerting to have someone speak from behind you as they’re starting to push you: the suddenness can make you feel very disoriented. It’s better to come around, look the resident in the eye, and say, “I’m going to take you back to your room now,” or “I’m going to move you over just a bit.” Understand that they are usually either arthritic or stiff and slow-moving: don’t pull or jerk their limbs in an effort to get sit them up straight or moved where you want them. Sometimes they can move where you want them to, but it just takes longer. Don’t treat them like children. You can apply this principle to any numbers of factors.

5. Don’t neglect the quiet ones. My mother-in-law never liked to be any trouble. Usually if she had a need, she’d wait until we got there to ask. She liked to keep to her room. She didn’t yell or make demands. There were some residents who honestly could’ve used one full time person just to assist them, like the man who kept trying to sit down without checking to see if there was a chair behind him or the woman who was constantly calling for someone to come into her room and help her or the woman who’d wheel her chair into other people’s rooms and go through their drawers. The squeaky wheel tends to get the oil, as the saying goes: there were times we felt like my mother-in-law was neglected because she wasn’t demanding.

6. Keep good lines of communication between administration and staff. Sometimes we’d talk to the administration about an issue, and they’d assure us it would be taken care of, but either it was never relayed to the staff or it was ignored. Sometimes the administration would tell us certain things would be done that were just impossible. For instance, when we toured one assisted living facility, the administrator told us the staff could curl my mother’s hair before we picked her up for church on Sunday mornings. Not only did that never happen, but I would never have asked anyone on a Sunday morning to do that: it was just too busy. They’d brush it and pin it, but no one had time to curl it. This is something I usually did on Sundays and I was fine with it, but it just made the administrator seem a little out of touch with the reality of life on the floor.

I don’t know if any care-giving facilities do this, but I would love for them to have regular meetings where the staff can be reminded of some of these principles and also let the administration know some of the problems they’re dealing with.

7. Use the TV but not to the point of deadening. In the memory-care unit especially, it seemed like the goal was to get everyone clean and dry and then seated around the TV in sitting room. I know the TV can be very helpful in occupying their minds and keeping them still and out of trouble, but keeping them herded around it all their waking hours is mind-numbing. Most of the assisted living facilities and even the nursing home would have some activities for residents, but in the memory care unit they pretty much just used the TV except for one time when someone brought out some balloons and had them tap them back and forth to each other. They loved it: their faces lighted up and they got excited. I know this group is probably the hardest to come up with activities for, but it is so helpful to have something different to do for even just a few minutes a day.

8. Breaks might best be taken in another room. Sometimes when we’d walk in and all the residents were around the TV and all the staff were sitting at the dinner tables, it just looked like no one was working. We’d tell ourselves maybe they were just taking a break, but when that seemed to be the case nearly every time we came in no matter what time of day, it just didn’t look good. I don’t begrudge anyone taking some time to rest in-between meals and baths and bathroom needs, and I understand that at times that’s best done where you can still keep an eye on everyone, but just be conscious of what it looks like, especially if a family member has an issue with something that hasn’t been done for their resident and it looks like people are taking it easy or chatting instead of working. It might be best if one or two staff members at a time took breaks in another room so they could fully relax for a bit and so it didn’t like like everyone was visiting while the residents were watching TV. I appreciated that the nursing home my mother-in-law was in did not allow anyone to use their cell phones on the floor: they had to be in the break room or at lunch to do so. That kept the main areas looking professional and free from distraction.

9. Put people’s needs over decorations. It is important that the building and facilities look nice. These are these people’s homes, after all. It can be very depressing when things look run down. On the other hand, the decorations and such shouldn’t be overly elaborate. In one of my mother-in-law’s facilities, their Christmas display rivaled that of the mall’s. Maybe all that stuff had been donated, I don’t know, but my first thought was that I’d rather have a little less in the decoration department and use the money to hire an extra staff person. Paying for an elderly loved one’s care is expensive, and it can be a little galling to see hard-earned money used in such a way. There needs to be some kind of balance between making it look nice and cheery but not overdone.

10. Don’t expect visitors to watch out for residents. In one facility, the main doorway was off the main sitting area, and the residents on one side or the staff sitting at tables on the other couldn’t see the front door from where they were. They had a number of residents that were always trying to escape. When you visit there often you get to know some of the residents, so when some of them were at the door when I’d come in, I’d be very careful to shut it behind me, or if they were there when I was leaving, I’d use another door even though it was out of my way. Once as I was coming in, a lady with a purse on her arm came out. A few minutes later one of the staff came into my mother-in-law’s room and told me I had let one of the residents out. Well, how was I supposed to know she was a resident? She was new, so she wasn’t familiar to me; she didn’t look as old as some of the other residents; and the purse on the arm threw me. The doors should be set so that the staff can see them. Most of us visitors don’t want to accidentally let residents out or endanger them in any way, but we can’t be expected to police the doors or to know every single resident.

11. Be clear about what you do or don’t do. Some of the fine points of grooming we weren’t sure about. It would have been helpful if, when we first interviewed, the administrator had shared what things they did and what things we were expected to have done on our own.

12. Refer to the care plan regularly. Sometimes we were asked to fill out a detailed care plan in the beginning, but then after a while several items on it would be neglected. It’s easy to get into a routine and think you’re doing everything and not realize something is being overlooked. Some facilities kept these in the room, others kept them in folders in the office, but either way, take time to look at it occasionally just to be sure.

13. Don’t blow off the family members. Please understand that when family members bring something to your attention, they’re not just trying to be nit-picky and gripey. They do so out of concern for their loved one and a desire to see the best care for them. If what they want is beyond the boundaries of your job, kindly let them know, or tell the administrator about the conversation so she can let them know. In one facility, the staff kept putting my mother-in-law in her recliner in such a way that her back was at an angle in the chair rather than having her lower back flush against the back of the seat. When she began to need two-person assistance, sometimes the aides would each pick her up under one arm and lift her from her wheelchair to her recliner, something that was quite uncomfortable in her severely arthritic state. My husband asked, “Can I show you how her physical therapist showed us to position her?’ (like transferring her with a gait belt around her waist, facing her with arms around her and holding onto the belt to help lift and transfer, and seating her in her chair in a way that was better for her posture). Some were very receptive, but some were not and said that they were trained and knew how to do their job.

The problems I’ve mentioned are some that we have experienced personally, and I am sure if we have, others have, too. That’s why I mention them. Sometimes we have brought an issue to the attention of the staff not to have them do something immediately (often we had already taken care of the problem), but just so that they could be aware and improve their services. We do know that no person or facility is 100% perfect, and sometimes mistakes will be made or concerns overlooked: we know everyone is only human (including ourselves). But being aware of some of these principles, especially the first few, would make a world of difference.

Please know that even if we’re discussing a problem, we are thankful for you and the work you do on behalf of our loved ones. And those who go beyond just punching the time clock and doing their job to taking an interest in and genuinely caring about their residents are worth their weight in gold, and we’re very thankful.

I wanted to add just a few thoughts to caregivers who work in private homes. Much of the above applies, but there are some particular factors involved in someone’s home.

1. Be on time. People plan their day around your being there.

2. Be professional. This is a job. Don’t take it casually. Give plenty of notice if you can’t be there for some reason.

3. Duty first. In someone’s home you will likely have some down time. It’s understood that in most cases you won’t have work to do every minute. But whatever you’ve agreed with the family that you will do while in the home, make sure that is done first before reading, using your iPad, or talking on the phone. It’s galling to have to do some of the tasks the caregiver was supposed to have done while she was there – not that we are above those tasks, but we paying $17 an hour for work that was neglected while she chattered on the phone.

4. Give the patient your full attention when feeding, changing, etc. Don’t use that time to talk on the phone. You should really be on the phone only when there is a pressing need: you’re being paid to work, and talking to friends and family just to chat should be done on your own time. And though your patient likely won’t need your attention 100% of the time – there will be time when he/she is asleep or watching TV, etc. — don’t just leave them in bed or their wheelchair unattended for long stretches of time while you sit separately doing your own thing. Part of what you’re being paid for is companionship.

5. Clean up after yourself. The family shouldn’t have to clean up your spills in the microwave or sticky residue on the end table where you set your coffee or food, etc.

6. Adapt to the people in the home. The other people in the house, usually family members, will differ in various homes. Some are extroverted and gregarious, some are private.

7. Don’t resent situations where the family members are watching TV or playing solitaire on the computer while you’re working. They may be paying for you to be there so they can work or run errands, but they’re might be paying you just so they can have some time “off.” They have care-giving duty all the rest of the time you’re not there, or they may hire full time caregivers because they don’t feel comfortable or able to do ti themselves.

In closing, since I am a Christian, I want to share with you some verses that have helped me in care-giving. Maybe they will be inspirational to you as well.

Now we exhort you, brethren, warn them that are unruly, comfort the feebleminded, support the weak, be patient toward all.
(I Thessalonians 5:14.)

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward (Matthew. 10:42).

To do good and to communicate forget not: for with such sacrifices God is well pleased (Hebrews. 13:16)

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister (Hebrews. 6:10).

So after [Jesus] had washed their feet, and had taken his garments, and was set down again, he said unto them, Know ye what I have done to you?Ye call me Master and Lord: and ye say well; for so I am. If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you (John 13:12-15).

With good will doing service, as to the Lord, and not to men (Ephesians 6:7).

For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me (Matthew 25:35-36, 40).

 

Adventures in Elder Care: Assisted Living and Nursing Homes

Eldercare

As I said in my first post in this series, when we were making decisions for my mother-in-law’s care, it helped me to read of other people’s experiences, so perhaps this will be of help to others. I hasten to say, though, that these are our experiences alone: they may or may not be typical and they are not meant as professional or authoritative advice.

If you foresee that you will probably need assisted living services for yourself or a loved one, the best recommendations will likely come from people you know who have also used them. Then either through the Yellow Pages or an online search, research what it available in your area. Most will have a web site for further perusal, and most are happy to set up an appointment for you to talk with the director and tour the facilities. Some good questions to ask them are listed in Seven Questions to Ask When Searching for Assisted Living and Assisted Living Community Evaluation Checklist.

There are a wide variety of assisted living facilities. My grandmother’s was basically an apartment complex for the elderly. She had her own kitchen and did her own cooking, but there was a nurse on site all the time who regularly checked blood pressure and such. Most facilities have common meals together in a dining room and provide housekeeping. Some have different levels of care, including hospice and an Alzheimer’s unit. Most provide activities for the residents; some even have “field trips” to area attractions.

Those in need of assisted living vary widely as well. Some are able bodied and sound in mind but no longer have the energy to keep up with a home. Most are in some state of decline, either physically or mentally or both, and others are confined to wheelchairs or have full-blown Alzheimer’s.

The key, then, is to find the best fit for your loved one, hopefully at a reasonable cost and not too far away. Realize that no situation is going to be perfect, whether your loved one stays with you or in a facility, but hopefully you can find a workable situation for all involved.

Let me say here that I would not recommend putting a loved one in a facility where there are no other family members nearby, especially if they have any kind of dementia. Even if they are near close friends or an active church family, those people will not have the same position of authority if any problems arise. Wherever you place them, you need to visit them often, not only to encourage them and show them love, but also to see that they’re being cared for well. Do not put them into a facility and assume they are being well taken care of and forget about them for months at a time.

I mentioned in my first post in this series about decisions that we had come to the conclusion that my mother-in-law needed to be in a facility. As we discussed the situation with other siblings, it became clear that moving her to live near us was the best option. Jim’s sister would be moving away from their town in ID, so placing his mom in a facility there would not be an option because there would be no one there to check on her regularly. She rarely complains, but to a fault: many times in the past we wouldn’t know there was some problem going on until we came to visit. When we asked why she didn’t let us know, she’d say, “I didn’t want you to worry.” So we felt if she was in a facility away from everyone, we’d never know how she was really doing. Other family members had careers and commitments, I was the only stay-at-home member at the time, our family could be involved in her life, the facilities in SC were much less expensive than in CA where Jim’s brother lived, so, all told, moving her East appeared to be the best solution.

The rest of the family lives out West, so they all gathered for Mom’s 80th birthday for a kind of farewell get-together. Jim flew back to help her get ready and to fly with her back East. Thankfully they did not have to close up the house at that time. His sister took care of that later when we got ready to sell it.

She handled the whole transition with a lot of grace. I can’t imagine leaving a home and church family of 35 years for such a major move. She did get understandably teary at saying good-bye, and one of the hardest parts was leaving her dog behind. She also got teary when her house was sold. But otherwise she has done quite well.

There was an assisted living place just a few minutes from us, and it worked out well for her to be there. It was divided into four smaller homier buildings, as opposed to a bigger, more institutional facility a little farther away. One of us visited her nearly every day, we brought her to the house often for meals and Scrabble and even to my youngest son’s basketball games, took her out to dinner a few times, brought her to church, etc. Being in a facility actually gave her a measure of independence that she enjoyed and faces to see besides ours. She was not inclined to participate in many of the activities: she usually preferred to stay in her room and read. But sometimes they’d talk her into going, especially if there was a church group singing. This facility had a bookmobile that visited at regular intervals and would even bring books to her room so she didn’t have to go rummage around for them. She was evaluated by a physical therapist and provided with a much-needed walker.

She was in that place for a year, until we had to move to TN because of my husband’s job. He valiantly staved off moving as long as he could, but finally we had to. She was in one facility here for a year, until her care needs reached a level they did not feel they could manage, and then in the “Memory Care” unit (not so much because of her memory but because she needed a higher level of care) of another facility for about a year and a half until she went to the hospital and then to a nursing home.

Each assisted living facility that we had experience with had different levels of care. Level 1 was usually minimal assistance needed: the resident could walk to and from meals, take care of their own bathroom needs, etc. Level 2 and 3 provided more assistance as needed, and of course, the higher the level of care, the more expense. We concluded that assisted living places were fine as long as you didn’t need much assistance: as Jim’s mom’s abilities declined, and the level of care she needed increased, the quality dropped off.

There were things we liked about assisted living:

• Access to physical therapy
• Regular checking of blood pressure, weight, etc.
• Camaraderie with others in the same situation. An older person can get a little depressed initially about the need to use a walker, etc., but when they see many other managing with one, it helps. They also see people in much worse conditions than themselves, which helps to put their own situation in perspective.
• Building friendships. My mother-in-law did not benefit from this as much because she preferred to stay in her room and read, but even with just going to meals, there were people who greeted her, were glad to see her, etc. It did enlarge her world a little bit.
• Family dinners. Two of the three facilities had regular dinners or events where family members were invited. It helped to get to know families of some of the other residents.
• We could decorate the rooms however we wanted (short of painting them), hang pictures on the walls, etc. to make it more homey.
• There were a few CNAs who were real pleasures, who were dedicated and kind and attentive.

But there were things we didn’t like as well. Most of these facilities were understaffed and the workers overworked and underpaid. We knew not to expect everything to go 100% like we’d like: no place is going to be perfect. But we didn’t expect to regularly have these kinds of problems:

• The only time we were away for an extended time was for my son’s wedding in another state. The day before we left, I found a broken picture frame on the floor – Mom was still using a walker then and must have accidentally knocked the picture off from where it was sitting. I picked up the big pieces of broken glass, went to the office, explained what happened, and asked if someone could vacuum up the smaller slivers. When we came back a week later, they were still there. Even without someone coming to clean that particular mess up, you’d think someone would have vacuumed the room in a week’s time.
• Food left on her face, from actual bits sticking to her face to a whole chin smeared with sauce, often enough to make red places on her face.
• The hearing aid was often left out, or put in without a battery, or the battery was put in backwards, causing her ability to hear and communicate to be almost nil.
• Food or poop (sorry for TMI, but it happens) would be left under her fingernails.
• When she began to lose the ability to sit up straight, we would come in to find her bent completely forward or bent to the side at a 45 degree angle. We purchased a shoulder harness that helped her to sit upright, but they said they weren’t allowed to use it because it was classified as a restraint. We could understand that, but we felt they could have straightened her up from a bent position and tucked pillows on either side, etc. Just looking at her should have alerted someone that she was extremely uncomfortable.
• One aide would give us grief every time we told her Mom needed to go to the bathroom. Then for a while, every time we would come in, she’d rush over and tell us that she had just taken her to the bathroom, and she’d had “a good poop.” Funny how no matter what time of day we came, she had just taken her. 🙂 The deal was, she wanted to take all the residents to the bathroom on her timetable. But of course they can’t all schedule their need to go to wait until she came. If, while we were visiting, Mom said she had to go to the bathroom, we’d call for an aide, and this one would question Mom about whether she really had to go, or make little remarks loud enough for us to hear when she took her in (“You don’t need to go? Well, we’d better try.”)
• Regular taking of supplies by the aides from one resident’s room to use for another. Granted, sometimes a resident would run out of Depends or wipes, and their family member couldn’t get there that day with more (often they didn’t let us know she needed some until she was completely out, even if it was 10 p.m.) But instead of “borrowing” from other residents, we felt the office should have kept a supply on hand that they could use in emergencies, and either incorporate it into the costs or charge the account of the person needing them. This was particularly rampant in one facility. Not only did wipes disappear at a fast rate, but Mom’s plastic cups, gait belts (used to help her stand up and to transfer her from wheelchair to other chair or toilet, etc.), and even her shower chair were used for other people, even though her name was on all of her things with black Sharpie markers. Clothes disappeared to who knows where.
• Some aides would not be gentle in moving her. For a long while, she could move and help them in their movement of her, but she’s stiff and arthritic, and it would take time. Some would jerk on her arm in ways that hurt her instead of taking their time and going about it slowly and gently.
• Some aides kept running conversations going with each other and did not interact with her at all while they transferred her or took care of her needs.

My husband would talk to the office about some of the problems, in a kind way – he’s not an angry ranter and raver. They were always very sympathetic and promised to make changes, but either that didn’t filter down to the aides, or they didn’t heed it, or things would improve for a while and then go back downhill. We did understand that if we came just after a meal, they might not have gotten to her yet to clean her up. Most of the time we would just take care of the issue and not say anything about it.

I mentioned the different levels of care. In the second facility she was in, as her abilities declined, a couple of aides began to complain about the extra work she required. We learned then that they had a rule that each resident had to be able to get out of the building on their own within 13 minutes during a fire drill. We hadn’t heard of that before. When Mom failed to do so, we were notified that she needed to move right away. No warnings, not 30 days, not even a week’s notice. We talked to the county ombudsman but found that assisted living facilities are not very regulated.

At the next place, we asked if we were going to run into the same problem when Mom declined to a new level, and they said no, she should be able to finish out her time there, and they could even arrange hospice care when it became necessary. She was there about a year and a half when she developed a serious UTI. She was prone to them, and her urine had a certain odor when she had one. When we suspected she had one, we asked the nurse at her facility if they could get a urine sample and then get her started on antibiotics (which they could do at this facility: they had a nurse practitioner who worked with them). For various reasons (among them their being out of toilet “hats” which they used to collect samples), they did not test her for a UTI until a week after we first mentioned it. They started antibiotics, but by that time the infection was rampant, and she was very sick and was taken to the hospital. While she was there we were told that they would not be able to accept her back. So we had about a week’s notice to find and arrange for her to be transferred to a nursing home.

We had talked to a couple of nursing homes before her last move and were told that she could be put on a waiting list, but it was rare that anyone was admitted through the waiting list: they usually were admitted after a hospital stay. Medicare’s regulation was that they would pay for 100 days of skilled nursing in a nursing home after at least a 3 day hospital stay. Mom was in the hospital for about a week, so that requirement was met. Physical therapists, occupational therapists, and speech therapists were all working with her, so she met the skilled nursing requirement.

When she went into the hospital, she had to be out on pureed foods, and she has not outgrown that. We never did figure out why. We thought maybe the depth of her illness as she battled infection caused her to be weaker, and then moving and adjusting to a new place and people was traumatic. But she has not regained the ability to eat regular foods without choking. All we can figure is that as she has gradually been losing muscular abilities (walking, going to the bathroom, feeding herself, etc.), this was a further loss of muscular strength.

The nursing home was the one facility we had been most afraid of, having grown up seeing people in them staring vacantly from wheelchairs or beds. But in many ways she received the best care there at first. They were very gentle in their handling of her. We didn’t have to bring up posture issues: they were on top of that. We learned there was such a thing as a Broda chair, which reclines and has little side pillows built in, so she could now sit in a wheelchair without being stuffed and strapped in. We had always thought it was sad, before, to see people in wheelchairs in the hallway, but now we understood that being out in the busier areas does get them out of their rooms for a bit, and it seemed stimulating to Mom to people-watch. Plus some people would speak to her as they passed by, giving her a bit more interaction than she would have had in her room.

One down side to the nursing home was that her living space was extremely tiny, and everything looked really run down. But a couple of the best aides were there, and one nurse, though seemingly gruff at first, ended up being one of our favorites.

But each facility is only as good as its weakest worker. Jim walked in a couple of times to see an aide feeding her, but watching TV while doing so and only interacting with Mom by shoveling food in. We asked them if they would turn off the TV while feeding her, make sure her hearing aid was in and working, and talk with her a bit while they fed her: we felt those measures would improve her eating. Some of them did. Then, after just a little while she would put up her hand to say she’d had enough. When Jim fed her and she did that, he would give her a drink, let her rest a bit, and then offer her more, and she would eat more. But the aides had the next person to get to, so at the first sign she was done, they’d move on to the next person. Even with regularly getting Ensures and high-calorie shakes, she got down to 90 lbs.

Then she developed a bedsore and couldn’t get into her wheelchair because of where it was, so she had to stay in bed for weeks while it healed. They had stopped physical therapy when she “plateaued,” but were still supposed to be putting soft splints on her arms and legs to keep her from curling up into a fetal position. But somewhere along the way that dropped off. So those weeks while she was in bed, she ended up curled up into a ball, and seemed lower than ever. When we would go to see her, she would often be sleepy or groggy, so we had no idea if she knew we had come, and she must have felt like she was spending endless days alone. People in the facility only saw her to change her Depends and feed her.

We had discussed often over the previous months whether we should try to bring her to our home. At this point we concluded that if we didn’t, she was going to waste away to nothing. In fact, when we first brought her home, Jim assumed that she didn’t have much time left, and he wanted to bring her home to pass away rather than having it happen while alone in her room there.

In my next post in this series I’ll discuss the ins and outs of having an elderly parent at home.

Caring for elderly parents

I mentioned a while back that my mother-in-law is moving here to SC from Idaho. Well, the time has come: she arrived Monday night. My husband flew up to travel back with her. His other brothers, a new sister-in-law, and two nieces also traveled up from other states, so, with the sister who already lived there, they had a bit of a mini-reunion.

Jim was concerned about the logistics of getting her to the airport, handling his luggage and hers, and getting the rental car back without having to leave her somewhere while he took care of things — she doesn’t have Alzheimer’s, but she can get confused in unfamiliar situations or when she is nervous. (The other relatives didn’t come with them to the airport because we fly in and out of an airport about two hours away and rent a car to drive home. Her little town does have an airport, but it’s exorbitantly expensive to fly to it.) Jeremy and I prayed specifically about that at lunch time, and Jim called me later and let me know that someone from Hertz offered to take care of the car for him and bring him the receipt; an airline employee took the luggage on an elevator for them and told them the wheelchairs were at the top of the escalator (she doesn’t usually use a wheelchair, but would have had a hard time walking the distances you have to in airports); a skycap wheeled her straight to the front of the line. Jim had allowed about an hour to take care of all of that and get through security, but it only took half an hour. We were so thankful that that all went smoothly!

She seems to be doing ok — she got a little teary saying good-bye, understandably. I just can’t imagine this week for her: saying good-bye to the area she has lived for 35 years, to the family on that side of the country (we’re the only ones on this side), to her dog, traveling across the country, and now facing a new living situation. I’ve been praying for God’s grace for her during this whole transition process. If you think of it, I’d appreciate your prayers for her and for us. As I mentioned in that earlier post, this is going to be a new situation for all of us.

I have found that when I tell people my mother-in-law is moving here, they smile and say something like, “Oh, that’s nice!” But when I say she will be living in an assisted living facility, their smile drops somewhat and they look a little uncertain.

I know some folks have the mindset that they’ll never put a loved one in a home. I probably felt that way myself at one time. But two things changed my thinking. One was the assisted living facility my grandmother was in. It was more like an apartment complex for older people with medical staff on the premises. She enjoyed living there and having a certain amount of independence while still having care close by when needed. It was hardly being “put away in a home” at all. Then, my grandfather had been living with his daughter, my mother’s sister. She worked full time, so he was home alone in the day time. He didn’t eat right, didn’t take his medications regularly, didn’t do a lot. After he had a series of small strokes, he went into the hospital. Some specification with his insurance or Medicare would only allow him to remain in the hospital a certain number of days: after that he had to go into a nursing home. My mom and her siblings stood around his bed and cried. But none of them was in a position to give him the care he needed. As it turned out, when the time came that he could have gone home, he decided to stay. He found eating three regular meals did help, and he enjoyed someone else providing them (many older people don’t like to cook for just themselves.) His medications were dispensed; he met people and had activities that were stimulating. He loved it and lived there several years until he passed away.

Though family members do have responsibility to see that their loved ones are cared for, there is no one right way to go about it. When a family has to make these kinds of decisions, there are several factors that come into play:

1. Housing situation. Not everyone has the space to include a new adult addition, or the house might not be conducive to someone with physical problems. Though Mom is only staying with us a few days until she moves into her new home, we’re concerned about her dealing with the steps. But this was one factor in deciding on assisted living care. We could move to a house that is all on one level if need be, but that takes time.

2. Availability of other family members. This is one of the reasons she moved here: much of the rest of the family was moving away from her area. I’m the only daughter-in-law who isn’t working outside the home.

3. Finances.

4. Mental ability. If the elderly parent has Alzheimer’s or mental confusion, someone would need to stay with them all the time, and even a family with a stay-at-home member might not be able to manage that between errands, school obligations if there are school-aged children in the house, etc. I know some handle this by hiring someone to stay with the elderly parent a certain amount of time each week.

5. Level of care needed. There might be some situations in which the older person needs physical or medical care that can’t be given at home.

6. Relationships. Some older people will always see their adult child as a child, and won’t follow instructions about medical care (e.g., medicines), food, etc., but they would take such instruction from medical personnel in an assisted living situation.

7. Personalities. We might be loathe to admit this and we might think that every family relationship should amicable, but in real life that is just not the case. Some relationships prosper with a little bit of space for each party. Privacy doesn’t allow me to disclose anything about situations I know of personally, but it is definitely a factor (by the way, this isn’t a factor with my mother-in-law. She is pretty easy to get along with).

8. Safety. Particularly Alzheimer’s or some forms of dementia in advanced stages may cause some patients to physically strike their caregivers when frustrated even if the patient would never have done that in ealrier years.

9. Socialization. I almost hate to even use that word because I know it is leveled as an unfair charge against home-schoolers has been a lack of socialization, and most of them get plenty of social interaction and don’t really need to be put into a classroom of people the same age to get it. But this is one of our concerns with my mother-in-law. If she lived with us, we would be her whole world — she wouldn’t feel the need to or have the desire to interact with others besides surface greetings at church. As we have talked with the staff at the assisted living facility, we feel this is an area in which she could benefit. Not only would she have the mental stimulation of interacting with others and participating in the activities there, but it might encourage her to know there are others who are going through the same things she is.

10. Independence. It might seem odd to list this as a factor when a person going into assisted living seems to be giving up their independence. But in such a facility they actually do get to make their own decisions and schedules and have their own living space. Some would feel that if they lived with their children they would be an imposition (even if the family is glad to have them), and they are more comfortable being on their own as much as they can be.

Not all of these reasons are factors for my mother-in-law, but they have been with friends dealing with elderly relatives. As we prayed and discussed the situation with the rest of the family over the past several years, we felt this was the best solution. We know to expect an adjustment period, but if she truly hates it or has a terrible experience, we’ll have to seek the Lord about what else to do. But for now we feel sure this is the right path.

My husband did all the initial legwork in researching the different facilities in out area. The one he chose is only about five minutes away from us, and it has a small, homey feel rather than a big institutional feel. Every time I have talked with any of the staff I have been reassured by their knowledge and attitude. As we have gone over several times in the last week to set up the room, hang curtains, etc., we’ve enjoyed saying hello to the other residents and look forward to getting to know them better. We do plan to visit often as well as bring Mom over to our house and take her to church with us.

I know there may be some bumps along the road for all of us as we figure things out, but ultimately I have every hope that this next stage in her life and ours will be a blessing to her.